As more and more children on ketogenic diets for epilepsy turn 18, they need a way to safely transition to an adult neurology clinic with diet supervision. Recognizing this need, registered dietitian Bobbie Henry and I collaborated with Dr. Eric Kossoff at the Johns Hopkins Pediatric Ketogenic Diet Center to create the first Adult Epilepsy Diet Center (AEDC) in August of 2010 in order to take care of these young adults. Over 250 patients have come to the AEDC over the past 5 years, and we have learned a great deal from our patients! What we found most surprising was that the majority of new patients that came to see us had NEVER tried diet therapies before and wanted to try them for the first time as adults.
In a paper published in Epilepsy & Behavior we reported the experience of 168 adults seen at the AEDC over 5 years. In the study, 35 (21%) were on a ketogenic diet when they came to clinic for the first time, and 133 (79%) had never tried a diet before. In the group who have never tried a diet, 106 patients were diagnosed with intractable epilepsy (ongoing seizures despite trying 2 or more anti-seizure medications). They were all prescribed a 20 gram per day carbohydrate limit modified Atkins diet (MAD) and followed for up to five years. In the study, 84 patients started MAD and 22 decided not to start.
What did we find?
- More than 3 out of 4 (77%) patients that were on a diet at the first visit stayed on it during the whole study.
- After 3 months, 45% of patients with intractable epilepsy that started MAD responded to treatment (had ≥ 50% decrease in the number of seizures) and 20% were seizure free. A quarter of patients had < 50% seizure reduction, no improvement, or worse seizures and 30% stopped before 3 months.
- Most patients that stopped MAD did so before 6 months.
- The most common long-term side effects were high cholesterol and weight loss.
- More severe side effects like kidney stones and bone loss were rare (each found in 1% of patients).
- Ketogenic diets may be safe and effective long-term in adults with epilepsy.
Since opening the Adult Epilepsy Diet Center, we have been challenged with unique issues for adults on ketogenic diets such as driving, moving to college or a group home, planning keto meals for yourself and "regular" meals for your family, alcohol use, and even pregnancy planning. These scenarios bring up some very interesting questions:
- Can adults use the diet instead of medication (either first or in place of anti-seizure medicines)?
- What about women who become pregnant on a ketogenic diet?
- Which diet is the best for adults?
Further studies are needed to answer these important questions.
Cervenka MC, Henry BJ, Felton EA, Patton K, Kossoff EH. Establishing an Adult Epilepsy Diet Center: Experience, efficacy and challenges. Epilepsy & Behavior 2016 Apr 5;58:61-68. doi: 10.1016/j.yebeh.2016.02.038. [Epub ahead of print].
Proceedings of the Ketogenic Diet Therapies Symposium, March 26-27, 2015 - Manhattan Beach, CA
This 2-day professional’s meeting was sponsored by The Charlie Foundation for Ketogenic Therapies, The Epilepsy Foundation of Greater Los Angeles and the national Epilepsy Foundation. Nutritionists, nurses, and physicians from seven southern California medical centers, plus guest speakers, assembled to share clinical pearls on applications of ketogenic therapies. Access the white paper here.